Hi all,
I’ve just received a result for my lumbar puncture (done on 9th May) which says oligoclonal bands were found in my CSF - but “regrettably no blood sample was received” - so they can’t tell if it’s due to local CNS activity (like MS) or a systemic issue.
The odd thing is that I definitely had blood taken at the same time. Has anyone else had this happen?
I meet the criteria for dissemination in space (with lesions in 4/4 places in my CNS as shown on my brain & spine MRI). Now just trying to confirm dissemination in time.
I’ll call tomorrow to ask if a repeat blood test/lumbar puncture is needed. I’ve read some places allow blood to be taken for comparison within 14 days of the LP (e.g. CSF Oligoclonal Bands).
Any similar experiences or advice welcome!
PS: A massive thank you to everyone who is so supportive on this forum - this is my first time posting, but it’s been such a treasure trove of advice and has made me feel so much less alone. Will be sure to update based on my experience in case this post can help anyone in the future who experiences something similar.
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Oh no - how very frustrating for you. I have never heard of that one before and do not know much about lumbar punctures and less about how they interpret results - my contribution to proceedings in my own case was limited to lying there are trying not to fidget. I am very sorry that you are having to find out far more about it than I ever had to. That really is annoying and I hope very much indeed that they manage to cobble together the information they need to assemble a satisfactory report for you and your medical advisors. And it goes without saying that I hope that you don’t have to have another one!
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Thanks so much for your sympathy and heartening words, Alison! Means a lot. Sorry you’ve had to be put through a lumbar puncture too - I also struggled not to fidget!!
In case it’s helpful for anyone else: I called the neurological secretaries today, and will have another blood sample taken tomorrow morning (exactly 2 weeks from my lumbar puncture), so very hopefully have dodged a second lumbar puncture.
FYI I found out that the blood sample was missing and/or unusable after checking the results for my lumbar puncture (after getting an email from myChart). Best guess is that a lab tech logged the result, but the neurology team hadn’t assessed my results yet (my next appt is in July) so didn’t spot that the sample was missing.
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I think the results for the blood sample are compared with those from the spinal tap to see if certain things have crossed the blood brain barrier from the blood to spinal fluid.
I am afraid I do not have a specific reference and have never had it explained to me but synthesised in my brain from morsels of information collected over time.
I think if the same things are found in both it is more indicative of MS but if things have not crossed it does not mean you don’t have MS.
Unfortunately there is no single test that gives a conclusive answer for everyone, though a history of symptoms and an unequivocal MRI scan does it for some.
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Thanks crd, appreciate the reply here. Think you’re right that they ideally need to compare the spinal fluid to a blood sample since the hospital seemed keen to get me in again.
Just had my blood taken again, so fingers crossed that can be used and no repeat lumbar puncture is needed!